02682nas a2200457 4500000000100000008004100001653001100042653001900053653001600072653002800088653002100116653002600137653002100163653001100184653001100195653001800206653001200224653000900236653001600245653002300261653002000284653002000304653002200324100002300346700001300369700001300382700001300395700001500408700001600423700001300439700001600452700001400468700001500482700001800497245009600515856006900611300001100680490001400691520150500705022001402210 2016 d10aBrazil10aChagas disease10aComorbidity10aCross-Sectional Studies10aDelphi Technique10aDisability Evaluation10aDisabled Persons10aFemale10aHumans10aLeishmaniasis10aleprosy10aMale10aMiddle Aged10aNeglected Diseases10aQuality of Life10aschistosomiasis10aTropical Medicine1 avan 't Noordende A1 aKuiper H1 aRamos AN1 aMieras L1 aBarbosa JC1 aPessoa SM F1 aSouza EA1 aFernandes T1 aHinders D1 aPraciano M1 avan Brakel WH00aTowards a toolkit for cross-neglected tropical disease morbidity and disability assessment. uhttps://academic.oup.com/inthealth/article/8/suppl_1/i71/2488427 ai71-810 v8 Suppl 13 a

BACKGROUND: Neglected tropical diseases (NTDs) are a group of often chronic and disabling infectious conditions, closely related to poverty and inequities. While it is estimated that millions of people are affected, accurate and internationally comparable data about NTD-related morbidity and disability are lacking. Therefore we aimed to develop and pilot a toolkit to assess and monitor morbidity and disability across NTDs.

METHODS: A cross-sectional, non-random survey design with a mixed methods approach was used. We conducted a literature review on existing tools to assess and monitor disability, followed by a Delphi study with NTD experts to compile a prototype toolkit. A first-phase validation study was conducted in Northeast Brazil among people with Chagas disease, leishmaniasis, leprosy and schistosomiasis.

RESULTS: Instruments included were the clinical profile, WHODAS, P-scale, SRQ, WHOQOL-BREF and WHOQOL-DIS. Most questions in the various instruments were readily understood with the exception of the WHOQOL-BREF, where additional explanations and examples were often needed. The respondents were very appreciative of the instruments and found it valuable to have the opportunity to talk about these aspects of their condition.

CONCLUSIONS: Our findings support the acceptability and relevance of five of the six instruments tested and the concept of a cross-NTD toolkit.

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